I don't want to be invisible

I've always been ashamed of the fact that I wanted desperately to be heard. It's why I've been obsessed with becoming a writer my entire life. An urge I could not stifle.

I mistook it for ambition for many years, an easy thing to do when living in New York City. And for awhile, I let the ambition dictate my actions. I worked from a place of ego. Which I don't recommend. It just made me sick.

It's hard to miss the theme of my posts these past weeks about being "seen" and "heard." Now that I have a moment to rest, I'm thinking back on my own words. I often release a post without much self-reflection. Not always, but sometimes I write fast and furious, push "post" before I even understand what it is that I said to you.

Now, I lay in my bed on a gorgeous Sunday. My kitty, Lucy curled up on my lap. I have two kitties. Did I forget to tell you that? Yes, I know I did. Something some shame about being a single chick with two cats, I believe. Stupid thing to feel embarrassed about in hindsight. I'll introduce you to them later.

The epiphany I wanted to share today is this: I finally figured out why I want so badly to be "seen" and "heard."

Why I asked you to share my pledge.

It's the same reason so many small children who are sick want to be a superhero.

When you're a chronically ill person, you're always looking out the window. At life. At people going about their day.

When my siblings and I got the same flu, they were out for two days. I would be out for two weeks. I had an autoimmune disease by age 17. The steroids I took for that illness are still impacting my fragile system now.

If someone who spends so much of their life stuck in bed, trapped inside a "bubble" of illness, what is it that they will crave the most?

Invincibility, for one. Which is why so many sick little kids want to be superheroes like that little boy in California who got to be Batman for the day.

The second thing many of us want is to not be invisible.

I feel invisible in our medical system.

I feel invisible without a job.

I feel invisible without a home.

Where do I belong? What framework do I have holding my life upright?

Nothing.

I am only tethered to your world through the keyboard of my phone and computer. And the rascal children who keep me grounded in the present.

I don't inhabit your world anymore.

I haven't for a long time.

I live in the world of illness. Where you spend all day in bed on Sunday because you used up all your juice the day before.

The reason I want so badly to be "seen" and "heard" is because I'm terrified I won't make it and I will be forgotten. Or, I'll just be the girl in the bubble that people point at while they walk by but don't really want to KNOW.

If I raise a ruckus, then I'm still alive! If I'm a solider and not just a medical patient, then I belong to SOMETHING! I'm still HERE! I'm not just in the Bubble! I'm still CONTRIBUTING to the WORLD!

My worst nightmare would be withering away in my parent's downstairs without anyone realizing I've left.

So yes, for the first time in my life, I asked for media contacts (in my line of work, it is unusual that I have never pursued media until now - whatever I've had, fell into my lap).

And yes, I asked you to share my posts.

I know some people may think it's about getting attention.

I will admit that it is. But not for the reasons most able-bodied people think.

That's not to say that I don't have *any* ego whatsoever when it comes to asking for help spreading the word about my story. But it's not the *primary* motivation.

If it was, I would have pushed my story out a long time ago. Hoping to get attention then.

This month, my overarching goal was to sound a red alert about what is happening in our government and spur people into action.

There is a reason Patty Murray's office called. That means whatever all of you did made a difference. I said it before and I'll say it again: this was a team effort and we all deserve that thank you.

I can't ignore the fact that I'm now in a unique position to keep helping. I'm not working (the only reason I'd ever stop working is if I'm forced to), I have a strange story that people want to hear about, and I happened to understand a little bit about politics. And I like to speak and write.

It would be easy to stay quiet, say I don't have the energy to fight.

But as you know by now: that's not my nature.

So I asked for your help. And many of you rose up just like I knew you would.

They will try again but this was still a huge victory. We battered a huge dent in their agenda to hurt vulnerable people.

I'm too old for Make-a-Wish to let me don a Wonder Woman suit and ride through the streets with everyone clapping like they did for that little boy Batman.

But I'm not too old to fight for democracy. Or, to fight against medical corruption. Or, to fight against ANY corruption.

And that's why I want to be "seen" and "heard" so badly.

Because however much time I have left on this planet, I want to make it count. I want to feel like I EXISTED. That my presence had SOME sort of ripple effect in the world.

I want to be the opposite of an invisible patient with an invisible illness.

And you helped me do that, and I will always, always be grateful for that.

So thank you for giving this sick kid a way to be SEEN. And HEARD. It meant the world to me to MATTER in some small way in this busy world full of healthy, able-bodied people that I no longer belong to.

Much love,
Jules
 

(p.s. We can do this)